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For those of us with NOT SO ROSY caregivers

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Funny thing this cancer, from my point of view, I so admire those that stand beside their man or woman, WOW, I admire you!!! You are truly it seems the few, and so admired by me, by so many of us.
For those of us, who do not have that miracle spouse, for those of us, whose spouse couldn't deal with it, the ones that left us physically or mentally, this is for us for a time not to be alone and yet we are.
A pondering of where we went wrong or what we did? What made them think they couldn't take another minute of cancer, that they ran away either physically or mentally, the ones that took to pills or alcohol? AT what point that we, the cancer victims in our struggle, our fight, (and we did fight), bring them down?
What point did they decide it was too much?? What happened in sickness and health? That first encounter or the second with cancer? When did they decide it was too hard to handle? We see caregivers here saying they've reached the end, guess we didn't mean that much in the beginning. We see our friends whose spouses have tuned them out or left. This my friends is not their wrong doing, no, they loved us well, but "it" cancer wore them down, they were but human mortals, the same as we, but that d@amn camel that broke the proverbial back, well...it just broke theirs. They tried hard, but were not quite so tough.
I don't know about you, mine loves me, somewhere deep down I know he does. But cancer is too much, so he escapes to the bottle, curse the bottle, curse cancer, this is how the weak deal with our cancers, running away, hiding or hiding in the bottle or drugs or leaving us mentally or entirely. So I indeed curse cancer.
Winter Marie

marqimark's picture
marqimark
Posts: 242
Joined: Jun 2011

I wanted to hide behind alcohol but couldn't tolerate it.

I just vegged out during the lowest health times.

My wife moved out of the bedroom. I looked like death, maybe I smelled like death also.

All better now (except a little nerve damage to hands, feet, anal area and ureatha area).

Mark

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010
Love seeketh not itself to please,
Nor for itself hath any care,
But for another gives its ease,
And builds a Heaven in Hell's despair. 
William Blake 
Phoebesnow
Posts: 567
Joined: Apr 2011

Leave the aa website up for him. Maybe get a copy of the blue book and leave it for him. Your soul is so beautiful winter Marie. I cherish your words. I will pray for you both.

Lovekitties's picture
Lovekitties
Posts: 3330
Joined: Jan 2010

I wish we did know the answer to why some relationships can survive, even become stronger, while others fail to hold up under a crisis situation. Even the duration from diagnosis to 'desertion', be it mental, emotional or physical, varies.

Cancer is h_ll in so many ways. Most of those it has never touched have no idea how many different fronts we fight on. We step up, take it on the chin, and fight on.

I envy each person here who has that great care giver or loved one who willingly takes it by their side.

But if I can't have my own personal 'great one', I do give many thanks for the support offered here. While 'cyber hugs' don't quite measure up to the real thing, the ones given here are right up there, because they come from those who know they are needed.

You are right Winter Marie...curse cancer and all it does to the many aspects of our lives.

Marie who loves kitties

Geri1959
Posts: 37
Joined: Sep 2011

I want to be that rosy caregiver, however it is very hard when the person you are caring for just gives up, and this is before the cancer has started this is after the 5th chemo... he thinks about tomorrow instead of today... I want him to think about today, think about drinking the 600 calorie shake that will help him build his body back up from the 20 lbs he lost, during the chemo think about resting when he needs it. Think about living not about dieing... I HATE CANCER!!!!

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

Some people can rise to the challenge of being a caregiver just as some of us with cancer can rise to the challenge and other's can't. Some with cancer hit the bottle too. I think much of it has to do with what kind of relationship/person one had BEFORE cancer that often dictates how much care the caregiver gives. If one has a volatile relationship prior to cancer, I don't think cancer will all of a sudden make things better. More likely it will make them worse. It's the straw that breaks the camel's back.
I'm thankful for the caregivers/advocates I have in my life. I've also found what goes around comes around.

I may have been driven to my first chemo but after that I drove myself to and fro to all 270+ treatments. It's boring for one, I often just sleep and also I'd feel like I'd have to entertain them if they went with me. I have been driven to surgeries, mainly because they won't let me out alone. Even as a baby I would climb out of my crib, get my bottle, drag it back to my crib and toss it over the side then go back in there...
Everyone's different.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

That my beau understood what it was for ME to be ill. It took alot of discussion, and I needed to accept that I needed to verbalize my feelings and my needs...in a positive way, but not all rosy....

With this newest bowel obstruction, he has learned the drill. He doesn't try to impose his will on me, including letting ME decide if and when we went to the 'Eerst Hulp' (Emergency room).

I don't know if this helped, but it helped our relationship alot...

Hugs, Kathi

Katteraus's picture
Katteraus
Posts: 3
Joined: Jul 2011

I have been with my husband for 15 years, he is a provider, works hard & he does love me. He was an alcoholic when I met him and still is! I have always been a strong person can deal with anything with a smile on my face. This past July I was diagnosed with rectal cancer stage 1 95% cureble but I still had to indure chemo and radiation, it has been a very rough road but have survived the chemo and radiation but the one thing I can't get over how my husband completely shut down on me! He has never been the lovey, touchy kinda of guy but I expected him to man up but instead he backed down and continued living his life as if I were not sick and so I hate him for that, I wished it were him that had to go thru what I had, telling him it shouldn't be me that is sick but him. Again, I have to understand he does love me but was never raised to be the "caregiver" like I expected him to be but he was still the man he only knew how to be the "provider"! So when you question the reaction of your spouse when your diagnosed with cancer just remember not all can handle it like we expect them too but they do love us!

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

To those who have to do it alone, my heart and prayers are with you.
I know you're out there. I feel you and love you.
Karen

laurettas
Posts: 372
Joined: May 2011

Don't you think it is fear? Cancer scares us so much and I think it is just more than some people can handle. And I think it is a sex thing also. I have seen the same thing when a spouse dies. The widower is much more likely to quickly jump in to another marriage than the widow. Don't think many men have learned how to deal with those strong emotions and tend to run from them.

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

Good post. As some of you will know what I had to deal with my ex husband, who started off taking charge etc but by the end of it all he couldn't handle it, and was generally blaming me for the cancer and everything associated with it. Ok if I didn't have my online csn family, my friends, my family (no matter how dysfunctional they are, my sister being there for me) I don't think I would have got this far. I agree with things everyone has said, especially what Phil did, it also depends on what your relationship was like before hand as well. But at the end of the day, the care givers who can't handle it, well all I can say is everyone is different, we all face life's challenges in our own unique ways, some are more stronger then others. What I have found is that, those who act strong generally when it comes to something like a life threatening illness they crumble.

Hugs to all who have stood by their families, to those who haven't well as I said we all handle things differently

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Quote...."Don't you think it is fear? Cancer scares us so much and I think it is just more than some people can handle. And I think it is a sex thing also. I have seen the same thing when a spouse dies. The widower is much more likely to quickly jump in to another marriage than the widow. Don't think many men have learned how to deal with those strong emotions and tend to run from them.".......unquote

......May I ask where you get your statistics ? or is that simply cannonfodder from a relationship gone wrong ? Some of that stereotyping is why that most men don't get their children in custody battles unless the wife is considered "loonytoons" or the man pays an unexorbitant amount of child support because the wife has to live as she did before, whether the kids are cared for or not ?

Not sorry, they are your feelings.....and these are mine on that subject...and yes my relationship with my wife is in the chitter but we have managed to become friends to keep our household together and for the sake of our children.

This is not against you personally, I admire anyone and everyone that faces this beast caregiver or patient, the journey is the same but the end result isn't, and whether we are man or woman we maybe instead of ridicule (maybe a little rash but loss for a better term) we support each other and instead of blaming a man for maybe not having inner feelings become aware that someone in the family group has to have a leadership role, and in my family I am considered a leader with my wife 50% in every aspect of our decisions of family matters, when I become inable to lead then she will assume the Alpha role in the relationship and all will still be well...Its not because men or women are less heartfelt, or stronger, its the ability to be a partner in every aspect of a relationship, and to know that when one partner slips the other is there to catch and visa versa, no matter who is caregiver or who is patient......We are all equal, all have the same basic instincts, and all share in success and failure, we should never side when it divides us, for then we find weakness, and as a whole we can better our chances at survival by being bonded at the hip in this journey.....Please take this as an act of clearing up something that just seemed to hit me wrong and probably at a bad time for me, and not personally, as I say things sometimes that I don't really mean but tend to say it anyway.......Love and my best to you........Clift

laurettas
Posts: 372
Joined: May 2011

After re-reading my post, I understand why you might be upset. I didn't say that as a slam to men but a sad reality for many men. They, especially the older generations, often don't know how to deal with deep, painful emotions. They were not taught, nor allowed, to express emotion. I think that is less the case for younger men but certainly true for the older generations.

I did notice, as well, that the ones lamenting the lack of support from their spouses/partners were women. That is one reason I thought it might be something stemming from male/female differences. The statement on widows/widowers is something I have read several times over the years and also something I noticed among family and friends that supported that fact.

For me to understand that it might be an issue that many men in general might struggle with would help me to understand that I might not just be married to a jerk. I am not in that situation so don't know how my husband would react, but if I were, I would find consolation, I think, to understand that the problem may not be his as an individual. Does that make sense? Hope so!

ddpekks's picture
ddpekks
Posts: 162
Joined: Sep 2011

I'm a caregiver. I am woman, hear me roar. I am strong, I am unbreakable, I am invinsible. I can do anything. And, I'm as full of poop as a Christmas Turkey, because these are all the things I thought when this cancer journey first started. Bunk!

I'm doing it, but I can say with all honesty, there have been times when I thought if I don't walk away (or crawl in a bottle of pills, or booze, or whatever) that I would watch myself dissapear forever.

And, I believe that if my personality were just a shade different I WOULD walk away. That's how hard it is sometimes. But, luckily, I'm not much of a drinker, hate taking pills and am just mean enough that I refuse to lose at anything, including seeing my husband beat cancer. So, to a certain extent, I'm still here out of spite!

Some people aren't that mean or that strong or that emotionally capable of dealing with this beast. And, I, for one, can truly understand that.

Does any of the above make any sense?

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Thank you......... :)

BTW....chessie or Lab or both...very pretty

ddpekks's picture
ddpekks
Posts: 162
Joined: Sep 2011

This is our Maximum Chocolate Overload....full blooded Chocolate Lab.

eibod
Posts: 160
Joined: Mar 2011

Yes, it makes perfect since.
As a caregiver of 2 years, I am still not sure what I am supposed to do, or more importantly, what I am supposed to feel. I have completely lost any personal identity
that I had, and most days am not sure who I am anymore. I am not a pillow fluffer, but
try very hard to be considerate and caring. I am here, for 2 years I have never asked
another soul to take him to chemo, fluids, labs, numerous surgeon appointments. I have
slept in hospital rooms, stayed up all night as well. I have cleaned up poop, pee,
blood,and vomit. I am still here. Before this I ran my own company and worked long hours,
for 19 years. Now I do not work. I know that he has and is suffering, I know that he
is afraid of the future. But speaking as a caregiver, we are not perfect. We get
scared. We get afraid of the future too. I am constantly afraid if I will be able to
handle what "may come". I don't drink or run away (where would I go??)
But I am sure I withdraw some, and get mean at times. Hopefully, this explains a little what "this caregiver" feels.

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010
...for 2 years I have never asked another soul to take him to chemo, fluids, labs, numerous surgeon appointments....

eibod,

What you describe here is the reason many primary caregivers burn out. As a patient, I look for someone other than my wife to take me for fluids, labs, chemo, and the various other things that this disease entails.

Being a caregiver does not (and should not) mean doing it alone. When my mother had pancreatic cancer, my father was the primary caregiver, but both my brother and I spent every minute with him and with her helping out where we could. This meant that my dad had time to himself, to recharge his battery.

Part of being a caregiver for Pete43's wife was running the family business.

Marie mentions her disappointment in her husband, but in other posts has praised how her kids stepped up their game.

The caregiver is rarely a single person, rather it should be a team, one is primary, but the others help keep everyone sane as well as healthy.

Here is a site that should help:

LIVESTRONG Get Help

eibod
Posts: 160
Joined: Mar 2011

You are right, I should have others take him to appointments. When I mention this, he says
something like "I know I am such a burden" and then I feel guilty again. My best friend
lost her husband to cancer several years ago. She has always told me to try and never do or
say anything that I would regret later. I am trying awfully hard to follow that advice. I
guess I feel that if he feels more comfortable with me taking him to appointments, than that is the least I could do. I want to try to keep going as long as I can, I don't know
what will come and at what time I will no longer be able to handle things. I will certainly look at the site you referred me to. Take care, Brenda

laurettas
Posts: 372
Joined: May 2011

That is an ideal situation, Blake, but one that many of us are not able to do. When my husband had cancer the first time, I did all of the care-giving except for a few weeks after our baby was born and our mothers came up. All our family lived miles away unfortunately. Ten months of intense work, keeping him fed, supported emotionally, filling in with the physical tasks he could no longer do even tho I was pregnant or had a newborn. That was life. Was it hard? You bet, took me about ten years to recover emotionally but we had no choice.

Now we are in a situation where we moved, have not made new friends and our family members that live close are my parents who are over 80 and our daughter who has five children 8 and under. They need OUR help and it would be a huge burden on them to ask them to help us. I have asked some family members for assistance for certain things but they won't help so either we just do it ourselves or it doesn't get done. You can't force people to help if they don't want to so you have to do what you have to do.

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

Family is an ideal, but I am aware that it does not always work.

Here is another way of looking at it;

Some people have no family, no spouse, no significant other. How do they get by?

In most communities there is some kind of social service, then there are support services offered through folks like ACS and LIVESTRONG.

Free rides to the doctor are available in many communities, in some places there are people who will come and clean your house, in others folks who will deliver meals.

Help is out there, but the caregiver needs to ask for it, and needs to take care of themselves so they can take care of the patient.

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

And this is why us CAREGIVERS need to have at least one day for ourselves to recuperate and remember who we are. It makes us stronger to look after our sick spouses. I tell my husband everyday that I love him, I try not to overstep the boundaries of making him feel as though he has lost all control. I still treat him like he is the "monarch" of the family even though it is me who makes most of the decisions. He fights me all the way, telling me that I need to know this stuff so when he is gone - I know what to do. I tell him, I know what to do. I looked after my ailing mother and 6 year old son for years while she suffered from cancer. I was able to pay the bills, and everything that goes with looking after the house and I was only 26 years old and newly divorced myself. I know what to do - i just don't want him to feel as though he has lost control.

On another note - your dog is beautiful. We just put our 12 year old yellow lab down - was the hardest decision we had to make. They are the best dogs, very loyal. As my husband sat in the den crying over the decision he had to make, our lab who was struggling to breathe and could not stand up - crawled 20 feet to him to comfort him, all the time with pleading eyes for us to put her out of her misery. We granted her her last wish, and now she is comfortable and playful agian up in heaven. She helped my husband through most of the difficult times of diagnosis and treatments - so it was harder on him to let her go than me (although she was given to me as a christmas gift) she will forever be his dog !

Sorry for the downers, still fairly fresh in our memories it has only been 9 days.

Sandi

Annabelle41415's picture
Annabelle41415
Posts: 6241
Joined: Feb 2009

Sorry you don't have that support. I'm so glad my husband is supportive and you and your situation has to be so hard. You seem to go with the flow and I'm not sure how you can do that. It's hard for caregivers to be there watching someone they love go through all that this disease entails. I'm hoping that things turn around for you and your husband can see you need him. I'm glad that you come here and share your life with us, you are a great assest to this board.

Hugs! Kim

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I wrote this chapter a few months ago, but this post seems relevant for me to post some excerpts about this very hot topic.

From the Caregiver's perspective:

They are the first ones in line to stand by our sides when we are just starting out. They are the last ones in line if we end up approaching an end-of-life scenario. They will be the “Last of the Mohicans” left standing when it’s time to pick up the pieces of their lives, when all is said and done and the tears have stopped.

BREAK

What these relationships represent for all of us is the “First and Last Line of Defense” in our cancer battles. They are the first ones in line to stand by our sides when we are just starting out.

“Remember the words we promised each other in our wedding vows – In Sickness and In Health?”

“They were just words back then, right?”

None of us ever really thought we would have to “Cash in that Chip” and actually have to take on that kind of responsibility when we said “I Do”.

We were young and healthy then with our whole lives stretched out in front of us. So when the minister uttered that phrase during the ceremony, we happily nodded our heads in agreement and hoped that this day would never come.

“But, it did come, didn’t it?”

Just like that, the life that we thought we knew was gone forever with those three little words from the opening chapter.

BREAK

I think that the caregiver role must be extremely difficult to handle for many reasons. To begin with, the first rule of thumb is that the caregiver now looks at their partners and begins to envision a life without them for the very first time.

That’s a lot to chew on with the first bite and can be very disconcerting for us to come to grips with. A lot of us have families with children and you’re left thinking to yourself how are you going to do this without my soul mate? These are sobering thoughts to have to contemplate. There’s a part of your brain trying not to think about it, but then there’s that corner of the mind that just can’t help thinking about it either.

These are not morbid thoughts; rather they are just human nature. You can’t help but stare down the road at a possible reality and acknowledge what could be your situation. It may not happen of course, but this is just part of your survival mechanism that is tapping into your subconscious and “Acting Out” on you.

Please do not beat yourself up over this. It does not mean that you have given up or are thinking the worse. It’s the survivor mode mentality that we talked about earlier, and let’s face it, SURVIVAL is the strongest instinct that we have going for us. It’s only normal to have thoughts about “What’s Next After This?”

BREAK

Yes, it’s a tough and thankless job, even on the best of days and circumstances. We often don’t say “Thank You” or “We Love You” or even better, “We Appreciate You” nearly enough. Some of us are so thoughtless, that we never get around to saying it.

So, let’s “Right this Wrong” while we are thinking about it. All of us take a moment here and reach over and hug our partners and tell them how important they are to us and how we really value their unselfish service and commitment. We don’t want to think about a world without them in it. They really do make our world spin on its axis.

FROM THE PATIENT'S PERSPECTIVE:

Well, to start with, we feel helpless and even worthless at times. This is not the way that we wanted it. This is not the way that we drew it up on the map. We have these feelings because we have lost our ability to contribute to the common cause and we are forced to temporarily sit on the “Sidelines of Life” as the parade goes marching by.

At a much deeper level, we are feeling vulnerable and weak. Where we once had strength, we now feel tired and puny. We begin to wonder to ourselves if we are ever going to get back to a fraction of the person that we were before. This scares us a little because for so long we’ve stood on our own two feet, made our own decisions, and handled our own business. Now we need some help and we’re not very good at needing help, are we?

BREAK

Whether we are the patient or the caregiver, there will be a lot of give and take as the battles wear on. There will be times when things are thin – and other times they are flush. Sometimes we are the windshield – other times we are the bug.

Cancer is going to beat on us and there will be times when either party might just want to throw in the towel. It’s during these trials that we must be our strongest, because as with any storm in our lives, this too will pass if we can just weather through it.

BREAK

Where once we were able to do for ourselves, we now find ourselves relying on our caregivers to have all of our needs met. As time goes by and we can begin to do the little things for ourselves once again, we find that we have moved off the physical reliance and over to emotional reliance with our partners.

Caregivers were already taking the physical needs off of our plates and now for dessert, we throw in our emotional needs and expect them to step up and take care of those as well.

“Are we asking too much?”

Unfortunately the answer is yes we are. No one person can be the “One Stop Shop” for all of our partner’s needs - and this is true even without cancer, much less with it.

If we are not really careful all of this will eventually build to a crescendo. After all, a person, even one who loves you can only take so much before they begin to crack, break and start to show signs of stress.

This is going to lead you down the path towards those tried and true feelings – “Bitterness & Resentment.”

BREAK

I guess what we really want is for them to “Kiss it and Make it all Better” just like when we were kids and scraped our knees on the playground. I suppose at the basic root of the issue is that we really want to be nurtured and comforted.

BREAK

Ultimately, what I think the caregiver is really feeling is the accumulation of everything that they have to deal with since your journeys both began and in a word it’s called SUFFOCATION.

It’s easy for their feelings to turn to bitterness towards you. They are angry that all of this is happening to you and them. They are upset that your treatment plan is not going according to their timetable that they want you to have. They just want things to get back to the way they were before all of this.

This makes it easier for resentment to set in as well. Since they are doing so much for you to care for your needs and are currently not having their needs met, they are a little miffed at you for not being there for them.

Now, they understand that you are sick and not yourself, but still they are ticked off at you in a certain respect, plain and simple. Sorry but that’s the truth of the matter. This doesn’t mean that they don’t care for you – they are just really mad at the overall situation and don’t have a good avenue to vent their hostility, so by default you get the brunt of their frustration.

Cancer just loves a “House Divided.” It makes it much easier when it sees the home team coming apart at the seams and in disarray. Cancer is a dirty fighter and will take any angle to drive a wedge between you and your partner.

BREAK

Please forgive us?

I want to thank all of the caregivers for all of the sacrifices that you make for us, we really do need you and appreciate all the things you do and how much of your time that you invest with each one of us. You have my utmost admiration for all of the work that you do and the kinds of people that you are. You are a very special group of folks.

Thank you everybody - I know Brenda has been having an extremely difficult time and said "someone should write a book on how people should feel." I'm in the process of doing just that for people just like her. This is part of my caregiver chapter.

With much love and respect to all:)

-Craig

eibod
Posts: 160
Joined: Mar 2011

Hi Craig, I have been reading your chapters as you post them. This post is certainly
"right on" target. Suffocation is a word that I had not used, but really describes the
feelings. I think my post sounded bitter earlier, I did not mean to. It is as you stated life has certainly changed, and we look around for someone to blame. I have to admit that sometimes I do find myself being angry at him, then the guilt sets in and that is just as bad. I appreciate this site so much. I feel like an intruder sometimes, because I am not
the one with cancer. But it helps me so much that I keep coming back! The actual support
group in our city is at the hospital on the chemo ward. I feel uncomfortable there since
that is the location of the onconologist, labs, and his professional caretakers. I mean
how could you go to a meeting there and vent as to how miserable you are when so many of
those people know your husband and treat him? So I will return the "thank you" back to
you wonderful people on this board. Even though everyone has their own battles to fight,
the care for others always shines through. Brenda

laurettas
Posts: 372
Joined: May 2011

you have such wonderful insights into the inner workings of this path that we are all on. Thanks so much for taking the time to put it in words. It's so nice to see what you are keeping stuffed inside expressed so well. Helps to know that you are not the only one having these thoughts and struggles!

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I took him to the doctor two months ago, finally got him to go, the doctor confirmed everything I had been telling him, which mostly is, if you don't stop drinking you are going to die. He already has ataxia, (means he walks slow, wide apart legs shuffling gate, pretty much like a 90 year old man, unsteady as well I have to walk slow and help him at times). He's weak from muscle loss (again alcohol)so that he struggles to get out of bed, I have to pull him out a lot of the times or else he struggles like a turtle upside down.
The saddest part of all of this is he started drinking when I was going to die, he had doctors, nurses etc., all telling him this, while I stayed strong, he was going downhill over it fast, it wasn't that we had trouble in our marriage, h@ll it's been mighty fine until cancer, you see, the sad part is he didn't want to go on with out me, and now here I am going to live a lot longer (I hope)and he got so stuck in the sadness and bottle, he just can't find his way back out. So I'm watching my husband die a slow death and there's no stopping him. So I hope that caregivers read this, and if it all seems too much, whatever you do, don't start to drinking every day to deal with it. Find a pill, find a pysch, something not harmful to yourself.
Winter Marie

laurettas
Posts: 372
Joined: May 2011

to hear about your husband's struggles, Marie. Sounds like he might be trying to kill himself so he doesn't have to face the possibility of you dying. Could your kids maybe talk to him and let him know how important he is to them and that they need him, too? Sometimes we get so wrapped up in our own fears and worries that we forget that others need us and the effect we are having on them. Hope he can gain control over the drinking, for all your sakes.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Here's a story that I never told you yet - until today. I felt the need to write you after reading your last entry about your other half and what's going on there.

First, I'm sorry that it's like that. I have no idea of how that must affect you on a daily basis, weekends and holidays included. I'm sure at the root of all your feelings, I'm thinking that you do not feel valued from your husband's reactions to your cancer.

What I see from the sidelines over here, is that your husband really "doesn't get it." It shows me that he has no understanding of what you've been through and the huge significance in the victory that you achieved.

"From worst to 1st" is one he11 of a turnaround in my personal opinion. The things you had done to get you to a watch and wait state were truly remarkable. It's a pity that your other 1/2 was seeing it through foggy goggles. I can tell you he really missed out. And that's his loss.

The other thing, is that at the moment and hopefully for the forseeable future, you are now 'clear' and not having to undergo surgeries or harsh treatments. You are putting your life back on track and taking charge of yourself. You are growing as a person, while your hubby is dying as a person.

Cancer is a disease, but so is alcoholism. It appears that he is on that bandwagon now, with no intent of hopping off...I'm sorry.

Now, what I wanted to tell you was this. All of those months when I was home sick out of my mind and hoping for death, I would think of you on some of those days around 4p my time and 2p for you.

With the few brain cells, I had remaining, I would be thinking well Winter's husband is home now about 2pm and he's probably got the bottle in his hand going at it - it's going to be another long night.

And I thought about it more than once - more than once or even twice. When I would go to bed, I could still see your husband pouring one more. I could see this abstract vision in my head. I heard you talking about this one day about how he would come home and start up ,night after night.

This reel played over and over again, and it just made me sad. Maybe, he started out to numb his feelings about your impending doom - and after you made it, maybe it was too late for him, or maybe he just didn't want to change his ways. Or maybe he is sick with his disease, that he no longer cannot on his own.

I'm not the inspiration around my household either, but my spouse is not trying to kill herself. Seeing you triumph and win a major battle while your hubby gives his life away is truly heartbreaking.

We only get one life - and I guess it's up to each one of us to make the hard decisions on how we are going to do that.

I would love something more for you. It's just got to be hard on you mentally and apparently physically now, with the things you have to do for him.

Some people are fighters and others are less than that...you know what you are:)

This is a trying time and I can't just bull$hit this one away....but you already know that.

Be good to yourself, because it seems you will be the only one who can be.

-Craig

High Desert
Posts: 4
Joined: Aug 2011

After reading your post yesterday I called my sister yesterday to find out how she was feeling as her back went out Friday and was in quite a bit of pain. she told me the day before her husband told her if she went down he was out of there,because he just couldn't take care of her and left to go fishing. I wanted to go over there and kick him in the head. My sister and I have been through so much this last year it just broke my heart anyone could hurt her like this. Last April my brother who was living with my father 87 yrs old, started talking funny and stumbling around, he had no health insurance or money. We thought he might have had a stroke he was 53. Took him to emergency they did a MRI and he had a tumor on his brain the size of a large grapefruit. They did a craniotomy on him the next day and he was his old self the next morning so gratefull to be alive. The next morning before we got to the hospital the doctors came in and told him it was lung cancer that had mestastsized to his brain. I immediately told my job I needed time off but could not get fmla for a sibling so I said i would use up my vacation time I had never been able to use. So began the journey he was okay for a few weeks through radiation and the chemo didn't affect him too bad he was a very strong man. I wanted to be sure he could get the best care available and be with him I know he was scared. My husband was wonderful about me staying at my dads only a couple miles away and neglecting him. My sister who was retired and lived two blocks away from my father was helping out also but not as much because her husband just couldn't understand why she had to go over there so much and made her feel guilty about neglecting him. My brother was paralyzed in his left leg the last month and literally had to crawl out to the car to get to treatments. During this time my father who was pretty healthy had a heart attack so there was no way I could take up all the slack and still my sister's husband was haranging her about "their Life". My vacation ran out and they said they couldn't hold my job open after 30 years of service I had to retire at 59, my husband didn,t say a thing although it would signifcantly affect our income and he would have to work more. My brother died two weeks later with his sister's holding his hands. One month later I was diagnose with rectal cancer had surgery and ended up with permanent colostomy and now on chemo my husband has been just wonderful though all this and even said he would have thought less of me if I hadn't done what I did and was my rock through it all. My sister husband was nothing but a selfish self absorb jerk and if any thing happens to him I will be the first to remind him how callous he was. So I know from both sides how hard this journey is for care takers and as a patient my brother was 5 years younger than me and was my best friend along with my sister. A week afer the anniversary of his death we were lookinf for a insurance check at my father's and I found two cards one for me and one for my sister from our brother thanking us for all we had done and how he never knew how much we loved him, it was so wierd that we hadn't seen them before and we just broke down and cried,it just isn't fair anyone should have to die from cancer in this day and age we should already have found a cure.

wolfen's picture
wolfen
Posts: 1321
Joined: Apr 2009

Can't begin to express my sadness at your current situation and similar situations of some of our other members. Sure, it's a difficult time for all members involved in a nasty medical diagnosis of any type. It's a long and winding, tortuous journey. The patient certainly didn't ask for this lot in life, nor the caregiver, but it's a heck of a lot easier not to make the journey alone.
Craig was "right on" when he mentioned that not many listen to those little words "sickness and health" in the marriage vows. I also remember something else I was taught at a very young age. It's called "The Golden Rule".
To those caregivers who are able to last through thick and thin with your loved one, I applaud you. To those who have some difficulty with this task, please remember "The Golden Rule".

Luv,

Wolfen

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Caregiver? I didn't read all these posts because i have to go to work now. But, I didn't have a care giver, I did it all myself, and worked and drove to work 2 hours commute to wrok and another 30 minutes to chemo. Sure, I may have gotten a cup of coffee or maybe a hand off the bed but that was it. My husband words were my comfort. My daughter still slept until noon, I played with our grand daughter and fed her. I slept in another room, becuase I didn't want to wake my husband, who had to work. I would get up at 3 am and paint the fireplace, the kitchen and then go to work! I must have had it easy!!! I guess.

Lord, I hope that I don't need a caregiver should this ever come back again! I would hate to depend on my husband for dinner and my daughter for clean clothes, Hmmmmmmmmm. They don't do it for themselves!

Off to work. Kick some *** girlfriend. Don't accept the alcohol, get him help. It's what he needs. Really, it's what he wants! He can't take care of himself.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

To sound like I was whining, I too take care of my grandson, I take him to daycare, pick him up, watch him until his parents get home, watch him while their in school. Wash and dry the laundry, cook for all, do the dishes, mow the lawn, just tore out a kitchen wall, cupboards and floor, and letting contractors do the rest, go to college full time, take care of alcoholic husband, I think I was just crying not whining, crying for the loss of my man, hopelessly wishing for him back, remembering his strong long strideful walk, his laugh, his sincere I love you's, his hand upon my the side of my stomach, making me feel warm and secure, just was remembering all these things, and feeling soulfully sad. You can not help those that refuse. Tomorrow we go back to the doctor, after the first visit where he was informed he would die if he kept it up, I arrived home before him, I asked him what took him so long (we were at the appointment together in separate cars)he had stopped to buy another bottle of vodka. You can beg, you can plead, you can cry you heart out, nothing does any good until he chooses to change. He refuses the help.
At this point he is nothing but skin and bones, he looks like a refugee from Sudan, he's weak, he shuffles in his walk, he is but a shell of the man he was. Get him help? How? He cannot be forced into rehab, or else he would have been there long ago.
And your last sentence "He can't take care of himself", no, he can't, and that is the saddest part of it all.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I hope you get him back....

I lost someone who was an alcoholic and it was sad that no one forced her to a rehab center. It can be done. Helps if you have insurance.

God Bless Winter Marie. It must be really tough. I wish you help and laughter, and a long strideful walk!

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I think the saddest part is what they do to themselves. Yesterday I left at 9:00 for school, I got home at 2:30 and he was long gone into the bottle, he went to bed, got up at 4:00 came outside where I was with his sweat pants soak and wet, I asked him what happened, he matter of factly said, I peed my pants (this happens often), he had fallen asleep and peed his pants while in bed (this also happen often)I made him change his sweat pants and an hour later his new sweat pants were wet from him peeing in them. That was yesterday, today he didn't pee his pants but fell down two times, I could not try as I might get him back up (due to drinking he has no muscle mass left and can't help get him up), both times I had to get my son to pick him up (this also happens several times on a weekly basis).
Tomorrow he goes back to the doctor to get his blood test results, they sent a copy, all show liver damage and almost diabetic, he has listened to me about it, maybe he'll listen to the doctor this time, but I doubt it.
Winter Marie

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Thank you my friend for being there.
Winter Marie

buckeye2
Posts: 428
Joined: Jul 2011

It looks like you are the caregiver not the patient in this case so you need to do what is within your power to get him better. Have you tried Alanon?

Lisa

eightpawz
Posts: 28
Joined: Sep 2010

I was VERY lucky. I had just started dating someone 2 months before my diagnosis. When diagnosed I told him he didn't sign up for this, and that I wouldn't think badly of him if he didn't stick around. His reply was perfect "I didn't see your name on a sign up sheet either." He stayed, and is still here. Sometimes I don't know why, because I'm not often the funnest company. He loves me and my daughter. We are VERY lucky girls.

-Dawn

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Winter Marie,
You are one amazing lady. I know Al-Anon is a life saver for many people who love someone who is an alcoholic. Here's the link http://www.al-anon.alateen.org/home

Hugs to you.

Aloha,
Kathleen

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Al-Anon might be a very good resource for you.

You are so right that you can't get help for someone that doesn't want it. My biological father is an alcolholic and so is my ex. My ex has anger management problems and was sent to treatment multiple times. It did no good, because he didn't believe he had a problem and didn't want help.

You can only control what YOU do about this. Do you put up with it? Ignore it? Do you find some support for yourself to help you make decisions going forward? Tough love?

I couldn't stay with my alcoholic angry ex. I'm so glad I did not. I cannot imagine going through my cervical cancer, and now colon cancer married to him. I am so blessed that my husband (of 8 years) has been with me through these rough times, and is so supportive.

We all have choices to make. Sometimes a wake-up call is needed for those that have headed down the wrong path. Maybe at Al-Anon they can give you some ideas to try and get some help for your husband. If he still refuses, then you have to decide to live with it, or get out. Sad, hard words to hear, but that is what it boils down to. I'm so sorry you have to live with this right now.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

We went to the Doctor's yesterday for his follow up appointment after his blood test, his doctor was very kind but firmly told hubby he needs AA and should be in a treatment situation but he had to stop drinking his liver is damaged, his red blood cells are enlarged and angry, and should he continue on his way he has months to a year to live.
We got in our truck and I asked my hubby if he was going to AA, he answered NO, I asked if he would consider a treatment facility, again NO, I asked him if he would go to a relatives house that do not drink, are in the middle of nowhere with no transportation available to him and try to quit there, this he agreed to. The doctor offered Valium to help him avoid the DT's, so we shall see if DEATH is a big enough deterrent for him.
Thank you all for your advice and help, I shall keep you tuned in to how he does.
Winter Marie

buckeye2
Posts: 428
Joined: Jul 2011

I am happy tp hear he is willing to at least give it a try. I wish the both of you strength. Lisa

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I've had to wait to see what I could post on this. It just hurt so much to read what some of y'all have had to go through, and I know that once again God smiled on me. My husband is very good to me, and I am so grateful for that. It is true that we have been through trials together: his sudden cardiac arrest, strokes and cancer for our parents, my cancer, and then both of his parents dying within a couple of years, each in a horrid way. The constant has been our love for each other and the determination to look past the tough parts to focus on the good.

I am well aware that I couldn't do that alone. It's hard enough when I have a loving partner in the journey. So, my prayers and love go to those who don't have the same blessing. I love all of y'all and pray life will bring better days.

*hugs*
Gail

keystone's picture
keystone
Posts: 134
Joined: Dec 2010

Bless your heart Winter Marie, as if its not alone hard enough to be going through your illness. I am a care taker and this its very hard for me to understand. I think Craig hit it on the head with his thoughts. We should be there for the long hall. If we need a break then we need to take it. Its so sad that this is all since your illness began. I wish you had someone, someone that could step up to the plate and help. I will certainly be praying for you and your hubby, you must be a very strong woman or you wouldn't be fighting as you are. Please keep us posted. Stephanie

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

I do not have a spouse nor was I dating anyone while I went through chemo. I was fortunate to have a great friend who moved in with me to help. If is was not for her, I do not know if I could've stayed sane. I have no family in the city I live in.

Getting sick made me realize who matters, and who will stand up, it was very revelatory. When people are not there for you during that time, it really reveals who they are at the core. Yes it is a tough road being a caregiver and God bless the ones who choose to do it. But if they are your spouse or your parent, they should be there.

here4lfe
Posts: 306
Joined: Jan 2010

As a caregiver, I have gone through a mental journey. From shock, to disbelief, to wondering about the future, dealing with the medical issues, on and on. I try to focus on the here and now, because it's the only way for me to cope. But it's hard, and the future is not clear.
Stage 4 cancer is not a car accident or a heart attack which takes you suddenly. It's the unwanted neighbor who does not mow the lawn, has junk cars scattered about in plain view, and has a dog which barks at the moon. Sometimes you call the cops, who show up, the behavior is mediated for a short time, then starts all-over again. Most times you just learn to live with it. The hope is that one day, the sheriff will have the appropriate court order to evict the nuisance neighbor, so we can continue our lives in peace.

Two years. I have a new vocabulary, have found out which friends can be counted on to help out, and which ones can't. This forum has been a comfort, to learn how others deal with this real issue.
The sun rises and sets on us just like it always has. So I get up, look out the window at the neighbors junky yard, look back at my wife, and thank the sun for another day.

Best

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